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	<title>Cleft Palate Archives - The Baha Mama</title>
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	<title>Cleft Palate Archives - The Baha Mama</title>
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		<title>Our Annual Pilgrimage to the Children&#8217;s Hospital in the City</title>
		<link>https://thebahamama.com/2018/06/annual-visit-childrens-hospital/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Tue, 19 Jun 2018 01:18:08 +0000</pubDate>
				<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Treacher Collins Syndome]]></category>
		<guid isPermaLink="false">https://thebahamama.com/?p=3049</guid>

					<description><![CDATA[<p>Here we are again. With warm, fuzzy nostalgic feelings as we settle into our room at the Ronald McDonald House. We have this down to a science now. Spending the night before at the RMH, that way we can actually arrive on time to our appointments. Usually we drive to the city in the afternoon, &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2018/06/annual-visit-childrens-hospital/"> <span class="screen-reader-text">Our Annual Pilgrimage to the Children&#8217;s Hospital in the City</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/06/annual-visit-childrens-hospital/">Our Annual Pilgrimage to the Children&#8217;s Hospital in the City</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p>Here we are again. With warm, fuzzy nostalgic feelings as we settle into our room at the Ronald McDonald House. We have this down to a science now. Spending the night before at the RMH, that way we can actually arrive on time to our appointments. Usually we drive to the city in the afternoon, But this time we drove in the morning. The kids always fall asleep as we are arriving in the city, and if they nap at 5pm, then it&#8217;s a pain to get them to go to bed. A 30 minute nap at 2pm, is harmless. Especially when followed by a 1 mile walk to go play in the splash pad.</p>
<p><img fetchpriority="high" decoding="async" class="aligncenter size-medium wp-image-3050" src="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3176-e1529289883564-300x272.jpg?resize=300%2C272&#038;ssl=1" alt="" width="300" height="272" srcset="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3176-e1529289883564.jpg?resize=300%2C272&amp;ssl=1 300w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3176-e1529289883564.jpg?resize=768%2C696&amp;ssl=1 768w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3176-e1529289883564.jpg?resize=1024%2C928&amp;ssl=1 1024w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3176-e1529289883564.jpg?w=2400&amp;ssl=1 2400w" sizes="(max-width: 300px) 100vw, 300px" data-recalc-dims="1" /></p>
<p class="p1"><span class="s1">This is our 11th trip to the children’s hospital in the city. We have made this long drive a lot in the past 3 years. It has been 11 months since our last visit, so I am actually feeling a bit rusty. We now just do an annual pilgrimage to the hospital. Although the doctors would love for us to come every 6 months. But we said “no” to the Christmas-time trip over the mountain pass.</span></p>
<p><img decoding="async" class="aligncenter size-medium wp-image-3051" src="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_2190-e1529289988217-300x280.jpg?resize=300%2C280&#038;ssl=1" alt="" width="300" height="280" srcset="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_2190-e1529289988217.jpg?resize=300%2C280&amp;ssl=1 300w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_2190-e1529289988217.jpg?resize=768%2C717&amp;ssl=1 768w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_2190-e1529289988217.jpg?resize=1024%2C956&amp;ssl=1 1024w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_2190-e1529289988217.jpg?w=2400&amp;ssl=1 2400w" sizes="(max-width: 300px) 100vw, 300px" data-recalc-dims="1" /></p>
<p class="p1"><span class="s1">Our daughter had cleft palate surgery a year and half ago, so, why do we keep going back? It’s basically a well-child-checkup overkill, so the doctors can make sure everything is going well and up-date their records.</span></p>
<p class="p1"><span class="s1">First we meet with the nurse. She weighs PipSqueak, listens to her lungs, and asks what foods she likes to eat. Basically, it’s the same well-child-checkup you do every year with your child.</span></p>
<p><img decoding="async" class="aligncenter wp-image-3055 size-medium" src="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3209-e1529368228701-286x300.jpg?resize=286%2C300&#038;ssl=1" alt="" width="286" height="300" srcset="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3209-e1529368228701.jpg?resize=286%2C300&amp;ssl=1 286w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3209-e1529368228701.jpg?w=639&amp;ssl=1 639w" sizes="(max-width: 286px) 100vw, 286px" data-recalc-dims="1" /></p>
<p class="p1"><span class="s1">Then we have a 1 hour appointment with Audiology. A hearing test to make sure PipSqueak can hear well with her hearing aids, and make any necessary adjustments.</span></p>
<p class="p1"><span class="s1">Then we have a 1 hour appointment with Speech Therapy. Never mind that we see ST locally, every week. But our local ST likes to hear what the hospital ST has to say, since she sees our daughter less frequently. I think the purpose is to evaluate PipSqueak’s development and give us advice such as, “focus on enunciating ‘b’ and ‘p’ word endings.”</span></p>
<p class="p1"><span class="s1">After all that, we are tired and hungry, so we take a lunch break. On previous trips, I would schedule a long enough break to give PipSqueak a nap, but now she’s too cool to nap. So we will just eat lunch at our favorite restaurant by the hospital and maybe play in a nearby splash pad. Or stay dry and just watch other kids play.</span></p>
<p><img loading="lazy" decoding="async" class="aligncenter size-medium wp-image-3052" src="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3178-e1529290187757-300x262.jpg?resize=300%2C262&#038;ssl=1" alt="" width="300" height="262" srcset="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3178-e1529290187757.jpg?resize=300%2C262&amp;ssl=1 300w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3178-e1529290187757.jpg?resize=768%2C672&amp;ssl=1 768w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3178-e1529290187757.jpg?resize=1024%2C896&amp;ssl=1 1024w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/06/IMG_3178-e1529290187757.jpg?w=2400&amp;ssl=1 2400w" sizes="auto, (max-width: 300px) 100vw, 300px" data-recalc-dims="1" /></p>
<p class="p1"><span class="s1">Then back up to the hospital. We see the Ear-Nose-Throat Dr (ENT) for a grand total of 10 minutes. He pretty much walks into the room to pry open PipSqueak’s mouth and say, “looks good.” I do not like this guy. His bedside manner is terrible. I don’t understand how or why he ended up as a doctor for kids! He also tries to convince us to put tubes in PipSqueak’s ears. Apparently kids who have cleft palate, have lots of ear infections. I keep reminding him, our daughter has never had an ear infection. “But that’s impossible!” Sorry, not sorry. That&#8217;s the truth. If you don’t like it, take it up with our chiropractor. </span></p>
<p class="p1"><span class="s1">Then we see the surgeon. He will probably check on the cleft palate repair, to make sure it looks good. He cannot do the hearing aid implants until PipSqueak is 6-8 years old. So I am not sure why we need to see him. Although he will probably talk about optional cosmetic surgeries to “minimize the facial differences so PipSqueak does not get teased in school.” Apparently having cheek bones is the antidote to getting teased? I will remind him that we homeschool and her one classmate (her sister) will no doubt continue to tease regardless of “facial differences.&#8221;</span></p>
<p class="p1"><span class="s1">That is the usual line up for our visits to the children&#8217;s hospital. Except for the times we came for pre-op, and surgery, or the time my daughter was born and stayed in the NICU. </span></p>
<p class="p1"><span class="s1">But this trip, we have a bonus appointment with the Sleep experts. That will take place a totally different building from the Children&#8217;s Hospital, so it&#8217;ll be a fun adventure navigating the maze of hospital buildings to find the right floor of the correct building. Once there, we will have a 1 hour consultation to talk about the possible reasons our toddler still does not sleep through the night, at almost 3 years old.</span></p>
<p class="p1"><span class="s1">After that, we will be done at the main hospital campus, and have a break to eat dinner. </span><span class="s1">Then PipSqueak and I will check in to the Sleep Lab for the night. They will put a bunch of stickers and wires on PipSqueak and then somehow she (and I) will sleep.</span></p>
<p class="p1"><span class="s1">It will be interesting to see the results. Best case scenario: we blame itchy eczema for sleep deprivation. Worst case scenario would be: sleep apnea caused by breathing difficulties. The potential solution would be jaw surgery to open up her airway and give her more room in her mouth for things like her tongue. Not cool, so I am hoping for best-case scenario. When in doubt, blame eczema?</span></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/06/annual-visit-childrens-hospital/">Our Annual Pilgrimage to the Children&#8217;s Hospital in the City</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">3049</post-id>	</item>
		<item>
		<title>The More Kids You Have, The More Kids You Have</title>
		<link>https://thebahamama.com/2018/05/the-more-kids-you-have-the-more-kids-you-have/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Sun, 06 May 2018 08:40:01 +0000</pubDate>
				<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[Life]]></category>
		<guid isPermaLink="false">https://thebahamama.com/?p=2758</guid>

					<description><![CDATA[<p>When I was a teenager, I babysat a lot. I had a 3-kid limit. Seriously, most parents do not want more than 3 kids, so why would you expect a teenager to watch that many kids? I also had an age limit &#8211; being that I preferred to watch babies and toddlers. Kids who don’t talk &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2018/05/the-more-kids-you-have-the-more-kids-you-have/"> <span class="screen-reader-text">The More Kids You Have, The More Kids You Have</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/05/the-more-kids-you-have-the-more-kids-you-have/">The More Kids You Have, The More Kids You Have</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<h3 class="p1"><span class="s1">When I was a teenager, I babysat a lot. </span></h3>
<p class="p1"><span class="s1">I had a 3-kid limit. Seriously, most parents do not want more than 3 kids, so why would you expect a teenager to watch that many kids? I also had an age limit &#8211; being that I preferred to watch babies and toddlers. Kids who don’t talk back.</span></p>
<h3 class="p1"><span class="s1">Fast-forward to adult-hood. </span></h3>
<p class="p1"><span class="s1">For a season, I worked at a day care, with two of us, watching 7 babies. Later, my husband and I spent a whole day watching a friend’s 4 boys. </span></p>
<p class="p1"><span class="s1">Somehow, my capacity actually shrunk once I had to care for my own child 24/7. But as she grew into a toddler, watching 1 other kiddo was great. It gave her a play-mate. </span></p>
<p class="p1"><span class="s1">One day, a few years ago, my friend asked, “can you watch my kid, <em>and</em> another friend’s 2 kids?” So on top of my own toddler, you want me to watch 3 Preschoolers? That is 4 kids! Are you nuts? Not to mention it </span><span class="s1">had been a long time since I had interacted with preschoolers. What would I do with kids who talk?</span></p>
<p class="p1"><span class="s1">So I politely declined. Sorry, friend.</span></p>
<h3 class="p1"><span class="s1">Fast-forward a few more years. </span></h3>
<p class="p1"><span class="s1">When our 2nd daughter was born, we survived 5 weeks living in the Ronald McDonald House, sharing a bed-room with our firstborn. Followed by 16 months of drowning in milk, just trying to feed the baby, while big sister was potty-training and peeing all over the floor. It was nuts! </span></p>
<p class="p1"><span class="s1">In the midst of that, I realized, babies are a lot of work (especially if they have cleft palate). But older kids are way easier. They can feed themselves, use to toilet themselves. Not to mention walk, talk, and tell you exactly what they want. </span></p>
<p class="p1"><span class="s1">After surviving that season of life, I have a much higher tolerance for chaos.</span></p>
<p><span class="s1">Our first-born is now a preschooler, so we have toys for when older kids come over to play. Not to mention a my daughter does a great job entertaining her friend, so I hardly need to interact with either of them. Our daughter is an extrovert and needs a play-mate all the time. Which is why I gave birth to her a younger sister. But as it turns out, siblings are not as much fun a friends. So now we have play-dates and kid-swaps, with families who have 2 kids the same-ish ages as my 2 kids.</span></p>
<p class="p1"><span class="s1">Several months ago, a friend asked if we could watch her 3 kids. That is no big deal. Now, I am used to occasionally watching 2-3 extra kids on top of my own two children. But then another friend called asking, “my babysitter canceled last minute, can you watch my 2 kids tonight?” </span></p>
<p class="p1"><span class="s1">Me, as a mom of 1 toddler, would have said, “heck no, I’m already watching 3 extra kids tonight. Are you insane?” But as a mom of 2 kids, my response was, “sure, why not? We already have 3 extra kids tonight, what’s 2 more?” The child who was the most work, was my own toddler, and I already had to feed her dinner anyway. So the rest of the kids were easy. Also my husband was home to help watch all 7 kids. And we always eat mac-n-cheese, when we have extra kids for dinner.</span></p>
<p class="p1"><span class="s1">As it turns out, the more kids you have, the more kids you can handle. But if I had 7 kids myself, I would need friends who also have 7-ish kids. Which would be a total of 14 kids, for only 4 adults. That sounds insane. Currently when we get together with all our closest friends we do have 15 kids <em>and</em> 12 adults &#8211; which is a much better ratio, and I&#8217;m only responsible for 2 of those kids. So I am just going to stop now at 2 kids. Because Mac-n-cheese for dinner every night is not a balanced diet. </span></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/05/the-more-kids-you-have-the-more-kids-you-have/">The More Kids You Have, The More Kids You Have</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">2758</post-id>	</item>
		<item>
		<title>Three Years Ago Today, I Received a Phone Call, Which Rocked my World.</title>
		<link>https://thebahamama.com/2018/04/the-phone-call/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Mon, 30 Apr 2018 08:31:59 +0000</pubDate>
				<category><![CDATA[Baha Hearing Aid]]></category>
		<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[Life]]></category>
		<category><![CDATA[NICU]]></category>
		<category><![CDATA[Treacher Collins Syndome]]></category>
		<guid isPermaLink="false">https://thebahamama.com/?p=2727</guid>

					<description><![CDATA[<p>Three years ago, today, our family was on a walk with our new friends. I enjoyed watching their two girls playing together. While my toddler followed them around. We had just found out we were having another baby girl! So I imaged what it would be like to watch my two little girls playing together.  &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2018/04/the-phone-call/"> <span class="screen-reader-text">Three Years Ago Today, I Received a Phone Call, Which Rocked my World.</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/04/the-phone-call/">Three Years Ago Today, I Received a Phone Call, Which Rocked my World.</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p><strong><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2729" src="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_4118.jpg?resize=300%2C225&#038;ssl=1" alt="" width="300" height="225" srcset="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_4118.jpg?resize=300%2C225&amp;ssl=1 300w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_4118.jpg?resize=768%2C576&amp;ssl=1 768w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_4118.jpg?resize=1024%2C768&amp;ssl=1 1024w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_4118.jpg?w=2400&amp;ssl=1 2400w" sizes="auto, (max-width: 300px) 100vw, 300px" data-recalc-dims="1" /></strong><span style="font-size: 16px;">Three years ago, today, o</span><span style="font-size: 16px;">ur family was on a walk with our new friends. I enjoyed watching their two girls playing together. While my toddler followed them around. </span></p>
<p><span style="font-size: 16px;">We had just found out we were having another baby girl! So I imaged what it would be like to watch my two little girls playing together. </span></p>
<h3><span style="font-size: 16px;">Then I received a phone call, which rocked my world.</span></h3>
<p><span style="font-size: 16px;">I do not usually answer the phone when I am with friends. But for some reason, that day, I did. I walked farther down the path, while my husband and friends continued to talk and watch our girls play.</span></p>
<p><span style="font-size: 16px;">Our midwife called to talk about the ultrasound. The doctor was concerned by what he saw. Micrognathia &#8211; a small lower jaw. Polyhydramnios &#8211; high levels of amniotic fluid. The combination meant the baby may not be able to swallow &#8211; or even breath on her own. </span></p>
<p><img loading="lazy" decoding="async" class="alignleft wp-image-2730" src="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/04_17-20wk-ultrasound-3d-e1524938565469-226x300.jpg?resize=180%2C239&#038;ssl=1" alt="" width="180" height="239" srcset="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/04_17-20wk-ultrasound-3d-e1524938565469.jpg?resize=226%2C300&amp;ssl=1 226w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/04_17-20wk-ultrasound-3d-e1524938565469.jpg?resize=768%2C1020&amp;ssl=1 768w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/04_17-20wk-ultrasound-3d-e1524938565469.jpg?resize=771%2C1024&amp;ssl=1 771w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/04_17-20wk-ultrasound-3d-e1524938565469.jpg?w=1522&amp;ssl=1 1522w" sizes="auto, (max-width: 180px) 100vw, 180px" data-recalc-dims="1" /> <span style="font-size: 16px;">I was shocked. But at the same time not surprised. I had noticed that the ultrasound pictures of her face looked odd. Thinking, it was just a weird angle. But why couldn’t the ultrasound tech give me one </span><em style="font-size: 16px;">good</em><span style="font-size: 16px;"> picture of her face?</span></p>
<p><span style="font-size: 16px;">Suddenly all the pieces fit together to make a full picture. She probably had Treacher Collins Syndrome, just like her Daddy. </span></p>
<p><span style="font-size: 16px;">My dream world came shattering down. Replaced with fears and uncertainties. Wondering what this diagnosis would mean for our little Lioness. And for our whole family. </span><span style="font-size: 16px;">Would she be able to breathe, eat, and hear? Or would we spend the majority of her first years in and out of surgeries.  </span></p>
<p><span style="font-size: 16px;">I went from dreaming of my girls playing together, to praying the baby would be able to breath.</span></p>
<p><span style="font-size: 16px;">The 2 years following that day, were a roller coaster. Ultrasounds, NICU, cleft palate, bottle feeding, weight checks, physical therapy, speech therapy, hearing aids, and countless trips to the children&#8217;s hospital in the city.</span></p>
<p><span style="font-size: 16px;">Finally this past year, we settled into a normal-feeling life. The memories of how hard that season was, have began to fade. Replaced by the joy</span><span class="s1"> of watching my little girls play together. Something I would take for granted. If not for the phone call, three years ago, today.</span><img loading="lazy" decoding="async" class="size-medium wp-image-2731 aligncenter" src="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_1465-e1524938732932-300x185.jpg?resize=300%2C185&#038;ssl=1" alt="" width="300" height="185" srcset="https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_1465-e1524938732932.jpg?resize=300%2C185&amp;ssl=1 300w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_1465-e1524938732932.jpg?resize=768%2C473&amp;ssl=1 768w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_1465-e1524938732932.jpg?resize=1024%2C631&amp;ssl=1 1024w, https://i0.wp.com/thebahamama.com/wp-content/uploads/2018/04/IMG_1465-e1524938732932.jpg?w=2400&amp;ssl=1 2400w" sizes="auto, (max-width: 300px) 100vw, 300px" data-recalc-dims="1" /></p>
<p>&nbsp;</p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/04/the-phone-call/">Three Years Ago Today, I Received a Phone Call, Which Rocked my World.</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">2727</post-id>	</item>
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		<title>When was I born? The Story of the Forgotten Sibling.</title>
		<link>https://thebahamama.com/2018/03/born-story-forgotten-child/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Wed, 07 Mar 2018 16:15:23 +0000</pubDate>
				<category><![CDATA[Baha Hearing Aid]]></category>
		<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[Life]]></category>
		<category><![CDATA[NICU]]></category>
		<category><![CDATA[Treacher Collins Syndome]]></category>
		<guid isPermaLink="false">http://www.zingale.org/?p=2469</guid>

					<description><![CDATA[<p>Duane and I just read the book, “Wonder.” We also rented the movie and watched it with our 4 year old, after Little Sis went night-night. Then we got to go visit a big school, just like in the movie. Big Sis does a show-n-tell presentation every week at our homeschool co-op class, so she was excited &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2018/03/born-story-forgotten-child/"> <span class="screen-reader-text">When was I born? The Story of the Forgotten Sibling.</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/03/born-story-forgotten-child/">When was I born? The Story of the Forgotten Sibling.</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p class="p1"><span class="s1">Duane and I just read the book, “<a href="https://en.wikipedia.org/wiki/Wonder_(Palacio_novel)"><span style="text-decoration: underline;">Wonder</span></a>.” We also rented the movie and watched it with our 4 year old, after Little Sis went night-night. Then we got to go visit a big school, just like in the movie. Big Sis does a show-n-tell presentation every week at our homeschool co-op class, so she was excited to see Dada do his presentation about &#8220;Wonder!&#8221;</span></p>
<p class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_0921-e1520437269744.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2471" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_0921-e1520437269744-300x184.jpg?resize=300%2C184" alt="IMG_0921" width="300" height="184" data-recalc-dims="1" /></a>Big Sis got to sit at a real desk with the big kids, just like Auggie in the movie. She would even raise her hand and ask questions too. </span></p>
<p class="p1"><span class="s1">Duane shared about his childhood, and travel to Asia. I shared about <a href="http://www.zingale.org/2016/02/when-did-you-fall-in-love-with-me/"><span style="text-decoration: underline;">falling in love with him</span></a>. And we talked about <a href="http://www.zingale.org/2015/09/whisked-away/"><span style="text-decoration: underline;">the birth of our 2nd daughter</span></a>. </span></p>
<p class="p1"><span class="s1">At some point, Big Sis raised her hand and asked, “when was I born?” </span></p>
<p class="p1"><span class="s1">We missed that part of our story, because our presentation was about Treacher Collins Syndrome (TCS). We rather unintentionally said to Big Sis, “this is not about you.” As Via said, in Wonder, “Auggie is the sun, he is the center of our universe and we all revolve around him.” Ouch!</span></p>
<h3 class="p1">It&#8217;s Not Easy Being the Sister</h3>
<p class="p1"><span class="s1">When I was growing up, my older sister was in a wheel chair. Everyone in our community knew who she was and was praying for her to be healed. And I was just her little sister. Instead of people saying, “Hi Becky, how are you doing?” They’d say, “Hi, how is your sister doing?” So </span><span class="s1">I always felt extra compassion for the siblings. Living in the shadow. Not wanting to bother parents with my problems, because they were small problems compared to what my sister was going through.</span><span class="s1"> </span></p>
<p class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_5324.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2472" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_5324-225x300.jpg?resize=225%2C300" alt="IMG_5324" width="225" height="300" data-recalc-dims="1" /></a>When we found out that our 2nd daughter has TCS, I immediately felt bad for her Big Sister. Realizing, this new baby would require a lot from us. The world would no longer revolve around Big Sis. </span></p>
<p class="p1"><span class="s1">At first, I was intentional, wanting to make sure Big Sis still felt loved and got quality time with us. But apparently life took over, to the point that we left Big Sis out of our family presentation. </span></p>
<p class="p1"><span class="s1">After I read “Wonder,” I read, “Auggie &amp; Me,” which includes the story of Christopher. He had been Auggie’s friend since they were babies, but then moved away. Several times, Christopher says, “it’s not easy to be friends with Auggie.” I</span><span class="s1">t is also not easy to be the sister. Friends get to choose their friends. I chose Duane. But my daughter did not get to pick her family, or choose to be the Big Sister. This is the family and the life she was given.</span></p>
<h3 class="p1">You can&#8217;t choose your family, but you can choose your friends</h3>
<p class="p1"><span class="s1">I could not ask for a better little person as my first daughter. I am so thankful I got to start mother-hood with a &#8220;normal&#8221; baby. She was an easy, happy baby. Now she is growing up to be so smart and funny. Big Sis</span><span class="s1"> is a born leader and a teacher. </span><span class="s1">If I want Little Sis to learn to say or sign a word, she will always copy what her sister is saying or doing. </span></p>
<p class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_0915-e1520437311473.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2470" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_0915-e1520437311473-215x300.jpg?resize=215%2C300" alt="IMG_0915" width="215" height="300" data-recalc-dims="1" /></a>When they play together, Little Sis says, “dats greem.” Big Sis corrects her, “no, that is blue.” And then helps Little Sis make the sign, “Put your hand like this. No, 4 fingers together. Now tuck your thumb. Not like that. Do this. Now that’s a B. Now shake it. That means Blue. Good job! High 5!”</span></p>
<p class="p1">Then Big Sis turns to me and says, &#8220;Mama, get your phone and take a picture and say, &#8216;awe, you are so cute&#8217; ok? Sister, come here, hug?&#8221;</p>
<p class="p1">Little sis responds, &#8220;O-tay. Heg.&#8221;</p>
<p class="p1">I love how much our girls love each other, and I am so thankful that they have each other.</p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/03/born-story-forgotten-child/">When was I born? The Story of the Forgotten Sibling.</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">2469</post-id>	</item>
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		<title>The Day We Got Schooled: Our Family&#8217;s Presentation on TCS and Wonder</title>
		<link>https://thebahamama.com/2018/03/we-got-schooled-family-presentation-tcs-wonder/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Tue, 06 Mar 2018 20:55:24 +0000</pubDate>
				<category><![CDATA[Baha Hearing Aid]]></category>
		<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[NICU]]></category>
		<category><![CDATA[Treacher Collins Syndome]]></category>
		<guid isPermaLink="false">http://www.zingale.org/?p=2491</guid>

					<description><![CDATA[<p>Recently our family was invited to be guest speakers at a local 3rd grade class. They had just read the book, “Wonder” and watched the movie. The book is required reading for most 3rd and 4th grade classes across the USA. “Wonder,” is the story of a boy named Auggie. He had been home schooled &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2018/03/we-got-schooled-family-presentation-tcs-wonder/"> <span class="screen-reader-text">The Day We Got Schooled: Our Family&#8217;s Presentation on TCS and Wonder</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/03/we-got-schooled-family-presentation-tcs-wonder/">The Day We Got Schooled: Our Family&#8217;s Presentation on TCS and Wonder</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p class="p1"><span class="s1">Recently our family was invited to be guest speakers at a local 3rd grade class. They had just read the book, “Wonder” and watched the movie. The book is required reading for most 3rd and 4th grade classes across the USA. </span></p>
<p class="p1"><span class="s1">“Wonder,” is the story of a boy named Auggie. He had been home schooled and now 5th grade is his first year going to public school. Auggie looks very different than the other kids, because he has as genetic condition, which effects the development of his facial bones. Auggie has the same syndrome as my husband, Duane and our 2 year old daughter, who have Treacher Collins Syndrome (TCS).</span></p>
<h3 class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_0920-e1520802194170.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2492" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_0920-e1520802194170-225x300.jpg?resize=225%2C300" alt="IMG_0920" width="225" height="300" data-recalc-dims="1" /></a>How Did We End Up Visiting School?</span></h3>
<p class="p1"><span class="s1">We had originally planned to have a midwife deliver our second baby. However our daughter’s diagnosis of TCS meant she needed to be born at a big hospital in the city 4 hours away. Now 2 1/2 years later, it was our midwife, who arranged for our family to speak at her daughter’s class. </span></p>
<p class="p1"><span class="s1">Our 4 year old daughter also just watched the movie Wonder, so she was excited to see a real school just like in the movie. We got to see our midwife again, and meet her daughter and her daughter’s classmates and their teacher.</span></p>
<h3 class="p1">Our Presentation</h3>
<p class="p1"><span class="s1">My husband mostly talked about not taking yourself too seriously (that is one of his precepts), along with having a sense of humor, and overcoming challenges. When a kid would say to him, &#8220;dude, your face looks weird.&#8221; He would respond, &#8220;I know! It&#8217;s crazy, isn&#8217;t it?&#8221; Which made it less fun for the kid who was trying to making fun of him. Duane shared about traveling to Asia, and how white Americans always get stared at, which for him was no big deal.</span></p>
<p><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_0931-1-e1520802734403.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2501" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/03/IMG_0931-1-e1520802734403-300x225.jpg?resize=300%2C225" alt="IMG_0931" width="300" height="225" data-recalc-dims="1" /></a>I shared about how <span style="text-decoration: underline;"><a href="http://www.zingale.org/2016/02/when-did-you-fall-in-love-with-me/">I fell in love with Duane</a></span>, but wasn&#8217;t sure about marrying him, because of his face. But then I realized that everything I loved about who he is &#8211; his sense of humor and confidence etc &#8211; is all because of what he went through in life.</p>
<p class="p1">My precept is, &#8220;who you are, matters more than how you look.”</p>
<h3 class="p1">Q&amp;A Time</h3>
<p class="p1"><span class="s1">My husband loves public speaking, so he talked for 30 minutes! (and I talked for 5) and then the kids asked lots of questions. Mostly things like:<br />
&#8211; “was your 5th grade a lot like Auggie’s?&#8221;<br />
</span><span class="s1">&#8211; “did you get made fun of?&#8221;<br />
&#8211; “how many surgeries did you have?&#8221;<br />
&#8211; “how did your parents react when they first saw you?&#8221;</span></p>
<p class="p1">Our 4 year old raised her hand and asked, &#8220;<a href="http://www.zingale.org/2018/03/born-story-forgotten-child/"><span style="text-decoration: underline;">when was I born?</span></a>&#8221; since we skipped that part of our family story. Oops!</p>
<p class="p1"><span class="s1">Our midwife and the teacher asked deeper questions like, &#8220;how should someone like me, respond when I see someone who is so different?&#8221; (Since we are taught not to stare). We know that Duane and our daughter look different, and we know people are staring, so please ask! It’s ok to ask, &#8220;what happened?&#8221; or &#8220;you look kind of different, why is that?&#8221; NOT &#8220;what&#8217;s wrong with your face?”</span></p>
<p class="p1"><span class="s1">Now thanks to the Movie “Wonder,” if I see someone staring at our daughter, I can break the ice, by asking, “have you seen the movie Wonder?” Most kids have seen the movie, so when I explain that my daughter has the same syndrome as Aggie, kids usually respond, “no way! That’s so cool!” </span></p>
<p class="p1"><span class="s1">I don’t think having TCS is cool, however it is cool that there is a movie about TCS.</span></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2018/03/we-got-schooled-family-presentation-tcs-wonder/">The Day We Got Schooled: Our Family&#8217;s Presentation on TCS and Wonder</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">2491</post-id>	</item>
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		<title>You never know how strong you are&#8230;</title>
		<link>https://thebahamama.com/2017/12/never-know-strong/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Sun, 31 Dec 2017 15:30:18 +0000</pubDate>
				<category><![CDATA[Baha Hearing Aid]]></category>
		<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[Life]]></category>
		<category><![CDATA[NICU]]></category>
		<category><![CDATA[Spiritual]]></category>
		<category><![CDATA[Treacher Collins Syndome]]></category>
		<category><![CDATA[WAHM]]></category>
		<guid isPermaLink="false">http://www.zingale.org/?p=2441</guid>

					<description><![CDATA[<p>Just before my daughter’s cleft palate surgery (in 2016), I saw a card with the quote:  You never know how strong you are, until being strong is the only choice you have.  That became my theme during my daughter’s surgery and recovery. It continued at a theme, with the discovery that my daughter needed hearing aids &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2017/12/never-know-strong/"> <span class="screen-reader-text">You never know how strong you are&#8230;</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/12/never-know-strong/">You never know how strong you are&#8230;</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p class="p1"><span class="s1">Just before my daughter’s cleft palate surgery (in 2016), I saw a card with the quote:</span></p>
<blockquote>
<p class="p1"><span class="s1"> <i>You never know how strong you are, until being strong is the only choice you have.</i></span></p>
</blockquote>
<p class="p1"><span class="s1"> That became my theme during my daughter’s surgery and recovery. It continued at a theme, with the discovery that my daughter needed hearing aids too. But </span><span class="s1">I didn&#8217;t want to just be strong for myself and my daughter. <em>I wanted to be a light in the darkness and bring hope to other families. </em></span></p>
<p class="p1"><span class="s1">Then, when I couldn’t find a comfortable, affordable headband to hold my daughter’s hearing aid, I decided to become the solution which I was seeking.</span></p>
<blockquote>
<p class="p1"><span class="s1"><i>When life gives you lemons, make lemonade.</i> </span></p>
</blockquote>
<p class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/01/purple-blue-bow.jpg"><img loading="lazy" decoding="async" class=" wp-image-2451 alignleft" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2018/01/purple-blue-bow-282x300.jpg?resize=244%2C260" alt="purple blue bow" width="244" height="260" data-recalc-dims="1" /></a>Or, in this case: when life gives you a hearing aid, start making headbands. </span><span class="s1">I chose to be strong, investing time and money, in spite of the risk of failure. </span></p>
<p class="p1"><span class="s1">Through that I discovered the joy of bringing light and hope to other families, by providing cute, comfortable, affordable headbands which our children love to wear!</span></p>
<p class="p1"><span class="s1">Turning a fun hobby into a successful business also led to a <a href="http://www.zingale.org/2017/10/success-steers-shift"><span style="text-decoration: underline;">Shift in my Confidence</span></a>. </span></p>
<p class="p1"><span class="s1">So, in hind-sight, my theme for the past couple years has been something like: </span></p>
<blockquote>
<p class="p1"><span class="s1"><i>When life gives you lemons, choose to be light in the darkness. Make lemonade to give hope to others. In the process, you will discover just how strong you really are. </i></span></p>
</blockquote>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/12/never-know-strong/">You never know how strong you are&#8230;</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">2441</post-id>	</item>
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		<title>I am NOT giving my Child every advantage possible</title>
		<link>https://thebahamama.com/2017/12/not-give-child-advantage/</link>
					<comments>https://thebahamama.com/2017/12/not-give-child-advantage/#comments</comments>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Mon, 04 Dec 2017 01:43:55 +0000</pubDate>
				<category><![CDATA[Baha Hearing Aid]]></category>
		<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[Favorites]]></category>
		<category><![CDATA[Life]]></category>
		<category><![CDATA[NICU]]></category>
		<category><![CDATA[Treacher Collins Syndome]]></category>
		<guid isPermaLink="false">http://www.zingale.org/?p=2374</guid>

					<description><![CDATA[<p>I have noticed a trend in parenting these days, which can be summed up in the phrase, “I want to give my child every advantage possible.” That sounds like the right thing to want. But sometimes it is wrong to just give a child an advantage. It is as if there is a foot-race, and I &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2017/12/not-give-child-advantage/"> <span class="screen-reader-text">I am NOT giving my Child every advantage possible</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/12/not-give-child-advantage/">I am NOT giving my Child every advantage possible</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p class="p1"><span class="s1">I have noticed a trend in parenting these days, which can be summed up in the phrase, “I want to give my child every advantage possible.”<b> </b>That sounds like the right thing to want. But sometimes it is <em>wrong</em> to just <em>give</em> a child an advantage. It is as if there is a foot-race, and I am fighting for my child to get a head-start over the other kids. That is not a fair race. But who cares? Since everyone gets a trophy anyway.</span></p>
<h3 class="p1"><span class="s1">I do NOT want to give my child “every advantage possible.”</span></h3>
<p class="p1"><span class="s1"> However it would be nice to minimize the <em>disadvantages</em> my child does have. I <em>do</em> want her to have a hearing aid, so she can hear just like everyone else. But I am <em>not</em> giving her super-sonic ears with spy technology, so she can eavesdrop on the neighbors 10 houses down. That’s just crazy.</span></p>
<h3 class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/wonder-the-movie.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2375" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/wonder-the-movie-200x300.jpg?resize=200%2C300" alt="wonder the movie" width="200" height="300" data-recalc-dims="1" /></a>I am thankful for #WonderTheMovie </span></h3>
<p class="p1"><span class="s1">It is about a boy named Auggie who has Treacher Collins Syndome.  My husband and our daughter is a &#8220;Real Life Auggie.&#8221; The movie is raising awareness and encouraging people to &#8220;Choose Kind.&#8221; </span></p>
<p class="p1"><span class="s1">I hope this movie does help remove some of the disadvantages for my daughter. However, there are still challenges in life which are unavoidable. </span></p>
<h3 class="p1">I think about the butterfly</h3>
<p class="p1"><span class="s1">When a caterpillar emerges from the cocoon as a butterfly, it is a struggle to get out of the cacoon. In that situation, any loving parent, should want to help their child. However, the process of struggle strengthens the butterfly’s wings so it can fly. If the butterfly receives help, and avoids that challenge, than the butterfly will never be able to fly. </span></p>
<p class="p1"><span class="s1">So on one hand, I do not want my child to suffer. But even worse, I do not want to be the reason she can never fly. I do not what to cripple my daughter by “giving her an advantage.” And I do not want either of my daughters to become a fragile snowflake who falls apart at the smallest offense. #SuckItUpButtercup</span></p>
<h3>Introducing Duane</h3>
<p class="p1"><span class="s1">7 years ago, I meet <a href="https://www.facebook.com/DuaneAZingale/"><span style="text-decoration: underline;">Duane Zingale</span></a> and quickly fell in love. Everything about Duane is amazing. His leadership skills, experience living overseas, love for people, the fun way he interacts with children, and his love for outdoor adventures, hiking, biking, and rock climbing. He is confident, not cocky, but secure in his identity. Duane has a great sense of humor and makes me laugh. While he is funny, he also knows when to be serious. He treats me well – opening the door, or offering a hand when climbing over boulders on our hike. Duane is willing and eager to hear my input on decisions. He wants to, not only be a leader, but raise up others in leadership.</span></p>
<p class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/IMG_4375-e1512349242381.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2376" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/IMG_4375-e1512349242381-300x264.jpg?resize=300%2C264" alt="IMG_4375" width="300" height="264" data-recalc-dims="1" /></a>In my eyes, he is perfect in every way. But there is just one thing which made me hesitant to marry him &#8211; Treacher Collins Syndrome. Because of that, his face looks noticeably different. He is missing cheekbones, and has a small jaw hidden behind his giant beard. He has prosthetic ears and wears a hearing aid. </span></p>
<p class="p1"><span class="s1">How would I feel going everywhere with him and having people stare at him, stare at us? </span></p>
<p class="p1"><span class="s1">If I had a TCS, I would have longed to be invisible, hoping no one would notice me. Being made fun of would have crushed me. But not Duane, He rose above that, confident, being loud and funny, not caring what people thought. </span></p>
<p class="p1"><span class="s1">Then I realized, everything I love about Duane, is shaped by what he went through in life. It is because of TCS, that Duane became the man who I fell in love with. I wouldn’t trade that for anything. So I married him. </span></p>
<h3 class="p1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/IMG_5312.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2379" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/IMG_5312-300x225.jpg?resize=300%2C225" alt="IMG_5312" width="300" height="225" data-recalc-dims="1" /></a>And then we had a daughter</h3>
<p class="p1"><span class="s1">Duane&#8217;s family did not have the TCS community on FaceBook. He never met another person who had TCS, until our 2nd daughter was born. As</span><span class="s1"> I saw my husband hold his baby girl for the first time, I looked at them in wonder, thinking, “wow, she looks just like Dada.” I am thankful she has a Dada who looks just like her, and is someone for her to look up to.</span></p>
<h3 class="p1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/IMG_5870.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2377" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/IMG_5870-285x300.jpg?resize=285%2C300" alt="IMG_5870" width="285" height="300" data-recalc-dims="1" /></a>Raising a Child who is not limited by the challenges</h3>
<p class="p1"><span class="s1">Since Duane turned out so well, I want to know how he was raised. That was 20+ years ago, so his parents did not all the free services that we have to today. For the most-part he was treated like a normal kid and so he grew up to be a normal adult. Actually I think he is above-average, probably because he doesn&#8217;t back down from a challenge.</span></p>
<p class="p1"><span class="s1">I don’t want my child’s entire life to be defined by her disadvantages. I don’t want her be treated like a celebrity for having special needs. Because if being “handicap” makes her feel important, then that becomes her identity. If she is defined by her challenges, then she limited to that. </span></p>
<p class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/IMG_6080-e1512349417366.jpg"><img loading="lazy" decoding="async" class="alignleft size-medium wp-image-2378" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/12/IMG_6080-e1512349417366-300x290.jpg?resize=300%2C290" alt="IMG_6080" width="300" height="290" data-recalc-dims="1" /></a>I think of <a href="https://www.facebook.com/Jono-Lancaster-179404148779245/"><span style="text-decoration: underline;">Jono Lancaster</span></a>, who also has TCS. The challenges he faced, made him stronger. Shortly after our daughter was born, Jono came to visit our family. He travels the world encouraging families that their child is not limited by their disabilities. Telling families like yours: your daughter can fly, and she will fly! </span></p>
<p class="p1"><span class="s1">It might take a lot more time and effort for my little girl to strengthen her wings, so she can fly. But once she flies, nothing will be able stop our little Lioness.<br />
</span></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/12/not-give-child-advantage/">I am NOT giving my Child every advantage possible</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">2374</post-id>	</item>
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		<title>It is almost Christmas!</title>
		<link>https://thebahamama.com/2017/10/it-is-almost-christmas/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Sat, 21 Oct 2017 22:31:08 +0000</pubDate>
				<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[Life]]></category>
		<category><![CDATA[Travel]]></category>
		<guid isPermaLink="false">http://www.zingale.org/?p=2261</guid>

					<description><![CDATA[<p>Monkey bounded into my room and jumped on the bed next to me. &#8220;Is it 7:30?&#8221; I asked. &#8220;No,&#8221; Monkey replied, &#8220;but sometimes I wake up before 7:30 and play in my room until it&#8217;s morning time.&#8221; “Ok. So why are you in my room?&#8221; I asked. &#8220;I had a cool dream last night!&#8221; She announced. &#8220;I &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2017/10/it-is-almost-christmas/"> <span class="screen-reader-text">It is almost Christmas!</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/10/it-is-almost-christmas/">It is almost Christmas!</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p class="p1"><span class="s1">Monkey bounded into my room and jumped on the bed next to me.</span></p>
<p class="p1"><span class="s1">&#8220;Is it 7:30?&#8221; I asked.</span></p>
<p class="p1"><span class="s1">&#8220;No,&#8221; Monkey replied, &#8220;but sometimes I wake up before 7:30 and play in my room until it&#8217;s morning time.&#8221;</span></p>
<p class="p1"><span class="s1">“Ok. So why are you in my room?&#8221; I asked.</span></p>
<p class="p1"><span class="s1">&#8220;I had a cool dream last night!&#8221; She announced. &#8220;I dreamed about Christmas! There were Christmas things. And my friend opened his Christmas present and it was new Clothing!&#8221;</span></p>
<p class="p1">Back when I was a kid, I thought receiving clothing for Christmas was a waste of my parent&#8217;s Christmas budget. Aren&#8217;t they obligated to provide clothing for me? Don&#8217;t wrap it up and call in a Christmas gift. Spend that money on toys! Unlike me, Monkey loves clothing, especially hand-me-downs from her friends. Wearing a shirt which used to belong to one of your best friends. What could be better than that? So seeing her friend unwrap clothing for Christmas, is a pretty cool dream for a four year old.</p>
<p class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/10/IMG_2114-e1508624772116.jpg"><img loading="lazy" decoding="async" class="wp-image-2263 alignleft" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/10/IMG_2114-e1508624772116-247x300.jpg?resize=199%2C242" alt="IMG_2114" width="199" height="242" data-recalc-dims="1" /></a>I love my daughter&#8217;s excitement and the sense of wonder. It&#8217;s only October, but already I am getting excited about Christmas too. Usually I am annoyed by the thought of cold and snow and icy roads. But this child of mine brings a new (or renewed) sense of wonder and joy. I have Pine &amp; Peppermint oils in the defuser. And don&#8217;t tell anyone, but we are already listening to Lindsay Stirring’s Christmas music. And it’s only October.</span></p>
<p class="p1"><span class="s1">Everyday Monkey excitedly makes random announcements:</span></p>
<ul>
<li class="p1"><span class="s1">Our tree has red leaves!</span></li>
<li class="p1">I saw leaves fall off our tree! That means it is Fall. And soon it will be Christmas!</li>
<li class="p1">There is frost on the ground. Does that mean it&#8217;s winter now?</li>
<li class="p1">How many days until Christmas?</li>
<li class="p1">We need to cook our pumpkins.</li>
<li class="p1">How soon after we eat pumpkin pie, will it be Christmas?</li>
</ul>
<p class="p1"><span class="s1">For the first time in history, our family is settled at home for Christmas. </span><span class="s1">We are not in India, buying a plane ticket with no idea where we are going to live once we get to the USA. We are not developing crazy food allergies the middle of a cross-country road trip. We are not drowning in milk and exhausted just trying to feed a newborn. We are not planning a surgery. We are just here. At home. No major trips, or events, or surgery to get over with before we can start thinking about Christmas. It’s quite lovely. </span></p>
<p class="p1"><span class="s1">The next big thing to anticipate is: Christmas! After we eat our pumpkin pie, of course.</span></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/10/it-is-almost-christmas/">It is almost Christmas!</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">2261</post-id>	</item>
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		<title>PipSqueak&#8217;s Confusing Dictionary</title>
		<link>https://thebahamama.com/2017/10/pipsqueaks-confusing-dictionary/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Mon, 16 Oct 2017 17:27:14 +0000</pubDate>
				<category><![CDATA[Baha Hearing Aid]]></category>
		<category><![CDATA[Cleft Palate]]></category>
		<guid isPermaLink="false">http://www.zingale.org/?p=2240</guid>

					<description><![CDATA[<p>PipSqeak got her hearing aid right after her cleft palate surgery. So before that, she couldn’t hear, and there were a lot of sounds she couldn’t make. “Ma-ma” was her universal word for everything. We had to count the number of syllables to guess what she was sayings. For example: Ma-ma-ma = banana. Now she can hear &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2017/10/pipsqueaks-confusing-dictionary/"> <span class="screen-reader-text">PipSqueak&#8217;s Confusing Dictionary</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/10/pipsqueaks-confusing-dictionary/">PipSqueak&#8217;s Confusing Dictionary</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p class="p1"><span class="s1">PipSqeak got her hearing aid right after her cleft palate surgery. So before that, she couldn’t hear, <em>and</em> there were a lot of sounds she couldn’t make. “Ma-ma” was her universal word for everything. We had to count the number of syllables to guess what she was sayings. For example: Ma-ma-ma = banana. </span></p>
<p class="p1"><span class="s1">Now she can hear <em>and</em> talk, so she is saying a lot more. It reminds me of a 1 year old who says “ba-ba” for bottle, ball, banana, and anything else which starts with the letter &#8220;B&#8221;. Except it’s more complex than that, because PipSqueak is 2 years old, so she says <em>lots</em> of words, <em>and</em> each word has at least 3 meanings.</span></p>
<p class="p1"><span class="s1"><a href="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/10/IMG_7706-e1508263397772.jpg"><img loading="lazy" decoding="async" class="size-medium wp-image-2244 alignleft" src="https://i0.wp.com/www.zingale.org/wp-content/uploads/2017/10/IMG_7706-e1508263397772-173x300.jpg?resize=173%2C300" alt="IMG_7706" width="173" height="300" data-recalc-dims="1" /></a>This morning, she was pointing at the fridge, yelling “gah-gah!” Honey, <em>Dada</em> is not in the fridge, he’s in his office working. “Gah-Gah!” No, you can’t have <em>chocolate</em> for breakfast. Oh, you want <em>katchup</em> on your sausage. </span></p>
<p class="p1"><span class="s1">I forgot that “gah-gah” means Dada, chocolate <em>and</em> ketchup. Those three words do sound <em>slightly</em> different, but they kind of all sound the same. So I began writing PipSqueak’s dictionary, to help me remember which is which, and notice how each word does sound sightly different.</span></p>
<h3 class="p1">PipSqueak’s dictionary</h3>
<p class="p1"><span class="s1">Ga-ga = Dada</span></p>
<p class="p1"><span class="s1">Ca-ca = chocolate</span></p>
<p class="p1"><span class="s1">Ca-cup = ketchup </span></p>
<p class="p1">Key-key = stinky (diaper)</p>
<p class="p1"><span class="s1">Chee = cheese</span></p>
<p class="p1"><span class="s1">Ghee = sausage (minus the “saus” so she&#8217;s saying just “age”)</span></p>
<p class="p1"><span class="s1">Ah-yah = Aria</span></p>
<p class="p1"><span class="s1">Ah-po = up, apple, applesauce, or orange</span></p>
<p class="p1"><span class="s1">Ah-po wee-wee = applesauce squeezy</span></p>
<p class="p1">Wee = TV</p>
<p class="p1">Bee = treat</p>
<p class="p1"><span class="s1">Woa-wee = Chloe</span></p>
<p class="p1"><span class="s1">Ow-wee = ouch, help me, or pigtails (help me restrain my hair, but it&#8217;s ouchy)</span></p>
<p class="p1">Ow-guy = outside</p>
<p class="p1">I&#8217;m a gu = I&#8217;m all done / It&#8217;s all gone</p>
<p class="p1">Hi a gu = here you go</p>
<p class="p1">Dah-gu = thank you</p>
<p class="p1">Oh = nose, toes, or Olivia</p>
<p class="p1"><span class="s1">Bay-bee = baby</span></p>
<p class="p1">bee-boo, bee-boo = poopoo diaper</p>
<p class="p1"><span class="s1">Buh-bur = sun butter</span></p>
<p class="p1">Bol = Ball</p>
<p class="p1">buh = Blocks</p>
<p class="p1">Buy = bath</p>
<p class="p1"><span class="s1">Buy-buy = vitimin</span></p>
<p class="p1"><span class="s1">Pie-pie = potty</span></p>
<p class="p1">Pay-er = (toilet) paper</p>
<p class="p1">Puh-pel = puzzle</p>
<p class="p1"><span class="s1">Nigh-nigh = night night</span></p>
<p class="p1"><span class="s1">Nigh-nit = blanket</span></p>
<p class="p1"><span class="s1">Mo-er = more</span></p>
<p class="p1"><span class="s1">Moo = moose</span></p>
<h3 class="p1"><span class="s1">Wah-dloo </span></h3>
<p class="p1">Wah-dloo = water, but that could mean one of many things:</p>
<p class="p1"><span class="s1">1) I&#8217;m thirsty and want a drink of water.</span></p>
<p class="p1"><span class="s1">2) My hands are messy and need washed in water.</span></p>
<p class="p1"><span class="s1">3) The table is messy and needs washed off.</span></p>
<p class="p1"><span class="s1">4) I peed water in the floor and you need to clean up that puddle of water. </span></p>
<p class="p1"><span class="s1">5) &#8220;Wah-dloo goo gob. Yay! (Clapping) ca-ca bee?&#8221; = I peed water on the potty. Good job! Can I have chocolate treat?</span></p>
<h3 class="p1">Oh No!</h3>
<p class="p1"><span class="s1">Oh-neyo = oatmeal. </span></p>
<p class="p1"><span class="s1">You see the problem with that? I ask, “do you want oatmeal?” and she responds, “oh-no.” Which sounds the like the opposite of what she is actually trying to say, “yes, I do want oatmeal.” Fortunately when she means to say, &#8220;no&#8221; she says a very firm &#8220;NYO!&#8221;</span></p>
<h3 class="p1">Sign and Say</h3>
<p class="p1"><span class="s1">This is where the beauty of sign language comes in. We are trying to learn how to sign important (food) words, so I can figure out which word she is actually trying to say. The problem is, our sign langue is the equivalent of mumbling. One &#8220;sign&#8221; has multiple meanings. Clapping her hands could be any sign which involves bringing both hands together in front of your body &#8211; more, cheese, paper, or maybe she is just clapping and cheering for herself.</span></p>
<p class="p1"><span class="s1">Touching her mouth could mean water, food, Mama, orange or maybe just mouth. </span></p>
<p class="p1"><span class="s1">Touching her forehead could mean Dada, moose, fix my pig-tails or I want my hearing aid on.</span></p>
<p class="p1">As long as we say and sign, so we can all clearly hear and understand what each other is saying, or at least narrow our guesses down to a couple options.</p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/10/pipsqueaks-confusing-dictionary/">PipSqueak&#8217;s Confusing Dictionary</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">2240</post-id>	</item>
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		<title>PipSqueak Graduates to Real Food!</title>
		<link>https://thebahamama.com/2017/02/pipsqueak-graduates-real-food/</link>
		
		<dc:creator><![CDATA[Becky TheBahaMama]]></dc:creator>
		<pubDate>Tue, 14 Feb 2017 03:11:41 +0000</pubDate>
				<category><![CDATA[Cleft Palate]]></category>
		<category><![CDATA[Treacher Collins Syndome]]></category>
		<guid isPermaLink="false">http://www.zingale.org/?p=1972</guid>

					<description><![CDATA[<p>PipSqueak was only allowed to eat pureed baby food for 8 weeks following her cleft palate surgery. Her record was 15 jars in one day, but she normally only ate about 13 jars. Fortunately I made a lot of my own baby food. Every few days I’d bake a couple sweet potatoes or squashes, or &#8230;</p>
<p class="read-more"> <a class="" href="https://thebahamama.com/2017/02/pipsqueak-graduates-real-food/"> <span class="screen-reader-text">PipSqueak Graduates to Real Food!</span> Read More &#187;</a></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/02/pipsqueak-graduates-real-food/">PipSqueak Graduates to Real Food!</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p class="p1"><span class="s1">PipSqueak was only allowed to eat pureed baby food for 8 weeks following her cleft palate surgery. Her record was 15 jars in one day, but she normally only ate about 13 jars. Fortunately I made a lot of my own baby food. Every few days I’d bake a couple sweet potatoes or squashes, or steam carrots. I filled every freezer container and ice cube tray. Then I realized why bother freezing it? She’s going to eat it all within three days away.</span></p>
<p class="p1"><span class="s1">One day, I ate Taco Soup for dinner and let PipSqueak drink some of the broth. PipSqueak became very excited with the realization that maybe she too was allowed to partake of real food. Ever since then, she begged to eat whatever we were eating. If there were liquids or purees, I let her have some. One day I let her eat the chocolate frosting off a cup cake, because frosting is pureed, right? After that she was even more excited and eager to eat real food! </span></p>
<p class="p1">The next few day were torture for all of us. PipSqueak begged to eat real food, but I kept saying, &#8220;no, here&#8217;s your squeezy food pouch.&#8221; Lesson learned: Do not allow your child to taste real food until she&#8217;s allowed to eat everything!</p>
<p class="p1"><span class="s1">Fortunately it was only a few more days until we were allowed to feed her non-pureed foods. I started by cutting a banana in small pieces. I set the plate in front of PipSqueak. she looked at it skeptically. She picked up a piece, scowled at it, and then touched it to her lips. Making a disgusted face, she turned her head away and set the food back down on her plate. She picked up another piece as if to put it in her mouth. At the same time, turning her face away, refusing to look at the gross banana bite. Finally, she actually convinced herself to eat a piece.</span></p>
<p class="p1"><span class="s1">It was as if she yelled with delight, &#8220;I forgot how much I love banana!&#8221; She was overjoyed by the wonderful flavor. Quickly she put another piece in her mouth, and another, and another. Soon her mouth was filled to overflowing. Banana oozed out between her lips. She wiped her chin and shoved it back in. Then she started gagging and coughing. Banana slime spewed from her mouth. Disgusted, she shoved it back in, while continuing to cough. Finally I had to intervene, scooping banana out of her mouth. Stop trying to kill yourself, you crazy child! </span></p>
<p class="p1"><span class="s1">She refused to eat banana for several days after that. However, she is more than happy to eat sausage, fig bars, and every flavor of crackers. Suddenly she was only eating 2 jars of food a day. My food budget is much happier too!</span></p>
<p class="p1"><span class="s1">All these crackers led to thirst! She did not love using a sippy cup, so after surgery she quit using the sippy cup all together. Who needs to drink water, when you’re living off a diet of smoothies? </span></p>
<p class="p1"><span class="s1">We tried all our sippy cups, straws, and drinking from a real cup. The results were the same, PipSqueak does not know how or when to stop sucking in liquid and ends up drowning herself. Then someone suggested the 360 cup, which I had lost in back of the cupboard. Success! </span></p>
<p class="p1"><span class="s1">Now PipSqueak is happily eating and drinking. She begs to taste everything we are eating too. Well, maybe not taste, but at least touch and smell all foods. Then decide which foods seem edible, and which ones to hand back to Mama. </span></p>
<p>The post <a rel="nofollow" href="https://thebahamama.com/2017/02/pipsqueak-graduates-real-food/">PipSqueak Graduates to Real Food!</a> appeared first on <a rel="nofollow" href="https://thebahamama.com">The Baha Mama</a>.</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">1972</post-id>	</item>
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